Archives September 2024

Navigating the symptoms of FTD can be difficult for loved ones, especially when someone living with the disease experiences memory-related challenges. However, as Catherine Savini shares, meeting symptoms with “yes, and” instead of “no, because” can turn encounters with frustration and isolation into meaningful moments of playfulness and connection.

Recently, a close friend was telling me a story about her mom, who was throwing a family party. She asked my friend to be sure to invite her brother and sister. The problem was, the two siblings had a falling out several years ago and no longer spoke. My friend dutifully reminded her, “Mom, you won’t see them both this Sunday. They had a falling out, remember?”

After hearing this story, I couldn’t restrain myself. “Stop telling your mom about their estrangement!” I said. “She doesn’t need reminding. Let her live in a world where her kids still get along!” My friend was taken aback. My advice seemed counterintuitive: why shouldn’t she correct her mom, especially about something so important?

Meanwhile, I had surprised myself with the intensity of my reaction. But there’s an obvious explanation: My own mom was diagnosed with behavioral variant FTD at 60. At times during her 10-year decline, I, like my friend, found myself setting her straight.

Here’s an example. One summer following her diagnosis, as I was struggling to help my mom get dressed, she kept looking at her closet. “I need to figure out what I’m going to wear to the wedding,” she said. I knew what wedding she was referring to. It had happened months ago; she and my dad traveled to New York City to attend. “Mom, you already went to that wedding,” I reminded her. “Now lift your leg so we can get your pants on.”

There’s an episode of This American Life where an actor named Karen shares a story about caring for her mother, Virginia, who was living with Alzheimer’s. Karen and her husband, Mondy, stumbled upon an approach that they found worked surprisingly well in dementia care: “Yes, and…”

“Yes, and…” is the first rule of improv. Improv performers are trained to always greet their scene partners’ utterances by first affirming them (the “yes…” part), then adding something new (“…and”) that layers onto the scenario they are collectively creating. “No” is banned in the improv world.

What I was doing with my mother could be called “no, because.” No, we don’t have to figure out what to wear to that wedding, because you already went. Instead of joining my mother in her world, I was jerking her back into reality. Unfortunately, it wasn’t until after she died that I realized the flaw in this approach.

For Virginia, “yes, and…” worked so well that Mondy, also an actor, started to enjoy it. When Virginia thought she saw monkeys, Mondy responded, “It’s pretty early in the season for monkeys…[But] if you see one again, we should try and capture it, because that would be a blast to have in the house.” Virginia had fun with it too. Of course she did; instead of being corrected for getting things wrong, she was met with affirmations and playfulness. Who wouldn’t prefer that? Not only did “yes, and…” make Virginia happy, it made her more likely to go along with Karen and Mondy’s caregiving suggestions.

“Yes, and…” sounds easy – it’s just two words. But FTD caregivers know that nothing about this disease is quite that simple. As motivated as we may be to take an approach that promotes good feelings, the effort needed to maintain this is monumental. Karen explained that practicing “yes, and…” with her mom frequently required her to disavow actual memories that she and Virginia once cherished. It can feel like you are not only losing your loved one, but also your shared past, and even yourself.

So what do we do?

First, simply try “yes, and…,” particularly in moments when it feels doable. My mom’s perpetual preparation for a wedding that she’d already attended would have been a perfect opportunity. Instead of focusing on putting her clothes on, I could have had some fun with her. We could’ve gone through her jewelry together, pulled outfits out of her closet, and skimmed magazines for hot looks. (To be clear, I’m not suggesting that we let our loved one engage in dangerous behavior; “yes, and…” does not apply when our loved one asks for the car keys or a bottle of wine.)

Second, recruit others to help “yes, and…” your loved one. Watching the person you love be devoured by this disease creates a pall over everything. Accessing the playful part of your brain in these moments can feel like trying to open a jar when your hands are covered with olive oil. Knowing this, we can recruit others to help us with a “yes, and…” approach so that when it’s too hard for us, others can tap in. There’s a reason improv is performed by troupes. And, given that “yes, and…” can be easier for those who don’t have a history with your loved one, hire people early and often to help out (if finances permit). I know that it doesn’t always feel comfortable to invite strangers into our homes to care for our loved ones, but it can lead to beautiful new relationships: one caregiver we hired formed such a bond with my family that when she got married (on my mother’s birthday), she delivered a toast to my mother. My mother died in 2017; today, we still see Trina and her husband at least once a year.

Before FTD vacuumed out her personality, my mother was a sharp woman who loved playing Scrabble, teaching students in her middle school library, entertaining guests at our beach home, and caring for her own mother and children. When my mom was diagnosed, we had never heard of FTD, and we did not receive any guidance on how to care for her, yet despite some regrets, I’m proud of how we did. My dad kept her at home as long as he could. When his own health issues forced him to move her into a memory care facility, he visited her every day, sometimes twice a day. He took dance classes with her and often fell asleep next to her on the common-room couch, while she and the other residents watched Hello, Dolly and My Big Fat Greek Wedding for the umpteenth time. I took a leave of absence from work and moved nearby so she could get to know her first grandkid. My father and siblings were great at injecting humor throughout the caregiving journey (as my sister demonstrates in her essay “What’s So Funny? Caregiving with a Smile”). We all tried to care for her as she cared for us, with good humor and compassion.

The heaviness of the daily tasks and the emotional burden of caring for someone with FTD can make levity feel impossible. But the simple framework of “yes, and…” can steer caregivers out of the frustration and isolation and toward playfulness and connection. I wish that instead of forcing her back into reality, I had joined my mother in a world where a wedding was forever on the horizon.

Dawn Kirby and her husband, Tim, are getting the word out about FTD. The couple were recently featured in an article in the Prairie Press (Paris, Ill.), where they talked about their advocacy on behalf of FTD awareness.

Dawn and Tim have fond memories of watching their daughter, Kara Ike, come into her own in her late twenties. Kara had found rewarding work as a nurse on a dementia unit in her hometown, and she had just become a first-time mother. But the Kirbys started to notice behavioral changes in their daughter after the birth of her son, Carson.

“We found our daughter was becoming irrational and had misplaced emotions,” Dawn said in the article. “She had a few behavioral issues… but she just wasn’t being our Kara, and it was getting worse.”

Eventually, Kara “began having auditory hallucinations, symptoms of postpartum depression and severe episodes of anxiety and psychosis.”

The Kirbys were determined to figure out what was wrong with Kara, but it took a year and a half to receive a proper diagnosis. “Every day we woke up thinking, ‘today [we] are going to figure out what’s wrong and make Kara better…’ but we went to bed every night defeated,” Dawn said.

Kara received several misdiagnoses before the Mayo Clinic arrived at bvFTD in 2019. “As heartbreaking as the diagnosis was,” Dawn said, “we knew the monster under the bed had a name.”

The Birth of an Advocate

Shortly after Kara was diagnosed, Dawn began finding ways to increase public awareness of the disease. Initially, she gave interviews with local media outlets and podcasters. She also presented an FTD Lunch & Learn to her local mental health clinic and hosted an AFTD Food for Thought fundraiser with her family.

“I wanted to do everything I could to make sure that another young mother didn’t go through this,” she said in the article. “I still want that. We’ve just continually asked God, you know, please just let something good come from this.” So, after Kara passed away on New Year’s Day, 2023, Dawn became an AFTD Ambassador to continue her role as “protective mama bear.”

Since then, she has held or participated in multiple AFTD events, working toward her goal of raising FTD awareness in the rural communities of Illinois, western Indiana, and beyond, including giving her testimonial to the National Alzheimer’s Project Act (NAPA) Advisory Council.

Still Going Strong

Never one to miss an opportunity to advance FTD awareness, Dawn has recently advocated for and obtained proclamations recognizing World FTD Awareness Week (Sept. 22-29) from Illinois governor J.B. Pritzker and Craig Smith, the mayor of Paris, Ill. The timing coincides with two special events she has been involved in: a television special about FTD, and a Food for Thought fundraiser.

The Kirbys were showcased in a PBS special that aired on September 24. Being Well: Frontotemporal Degeneration, featuring “Kara’s Story: Love Needs No Words,” was created by the team who produce the television series Being Well, on WIEU, the PBS station in Charleston, Ill. The special is now available on the WIEU Being Well YouTube playlist.

In conjunction with the television special, Dawn also created a Food for Thought event. Food for Thought: Family, Friends, Food, Fishing & FTD Awareness was a family-oriented fundraiser hosted by the Kirbys and AFTD. During the event, attendees took time away from the activities to watch the special together.

For those who would like to help Dawn reach her fundraising goal, you can donate through her Food for Thought Classy fundraiser.

Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event, hosted by AFTD volunteer Jeanne Cestone, taking place from 10:30-11:30 a.m. on Saturday, October 26, 2024. The event will be held at the Appoquinimink Community Library in Middletown, Del. (204 E. Main Street).

RSVP for this event by emailing [email protected]. To learn more, download this flyer.

September is Suicide Prevention Month. Below, Deb Jobe, a member of AFTD’s Persons with FTD Advisory Council, courageously shares the story of her suicide attempt following an FTD diagnosis, and how she returned from wanting to end her life to fully embracing it. 

As I sit here in my backyard feeling the sun’s warmth, watching the hummingbirds zip from feeder to feeder and listening to nature’s music, I realize how blessed I am. I say this even though there was a period in my life where I felt overwhelmed, lost, so lonely, and of no value. Why? I was diagnosed with FTD in conjunction with corticobasal syndrome.

I clearly remember sitting with my husband as the neurologist went over my tests and delivered the diagnosis. Our world crashed around us. A thousand thoughts ran through my head and overwhelming despair settled in my heart. This is not a disease that runs in my family.

Within six months of diagnosis, I felt there was nothing to live for. Worried that I would become a burden on my family (emotionally and financially) and lose my independence (no more driving, cooking, or riding my bike), and facing sudden retirement from a 34-year career I loved, I attempted suicide.

Numerous studies have shown that people with dementia, and FTD specifically, have an elevated risk for suicidal thoughts and behaviors:

• A study of the U.S. veteran population that was published in 2018 in the American Journal of Geriatric Psychology found that persons with FTD exhibited suicidal behavioral more frequently than persons diagnosed with other forms of dementia.
• In 2019, the American Journal of Alzheimer’s Disease and Other Dementias published a study finding that 40 percent of persons diagnosed with behavioral variant FTD had suicidal thoughts, compared to just 8 percent of an undiagnosed control group.
• In 2021, a Psychology & Health study found that the suicide rate of persons living with FTD or Huntington disease was 2,996 per 100,000 people, much higher than the suicide rate of the general population (10 out of 100,000).

Thank goodness that, despite my suicide attempt, I am still here. Today, I am living well, enjoying precious time with my family, and discovering new activities every day!

People diagnosed with disease as life-altering as FTD may experience depression, stress, isolation, and hopelessness that could lead to suicidal thoughts, with younger individuals experiencing a higher rate of such thoughts. I am a living example of this. I was diagnosed four years ago at age 53.

How did I recover from attempted suicide? A host of supports and services. It reminds me of the saying, “It takes a village…” My neurologist and primary care physician provided referrals for:

• Ongoing counseling
• Cognitive/behavioral speech therapy
• Physical and occupational therapy

We also used valuable resources from the Association for Frontotemporal Degeneration (I especially recommend the HelpLine: 1-866-507-7222 or [email protected]). Additionally, support groups provided the opportunity to talk to others who understood. We also used prayer and our faith to help guide us.

I began to realize that life is not hopeless: I am still me, and can contribute. Almost four years later, I now think of my post-diagnosis life as a journey. Journeys span a period of time, and each journey is unique and progresses differently for each person.

My life has become simpler, slower paced, and I enjoy the little things more. When negative thoughts start creeping back, I go back to counseling. There is NO SHAME when these thoughts occur! YOU ARE NOT ALONE!

If you or a loved one notices changes in the person living with dementia (PLWD), please reach out to your doctor(s) for help, and contact AFTD.

We are People Living With Dementia, and WE CAN STILL LIVE!

If you are having thoughts of suicide, call or text 988 to reach the 988 Suicide and Crisis Lifeline. You can also visit the website of the International Association of Suicide Prevention for more resources.

On August 8 and 9, AFTD hosted an industry advisory panel in which a group of people whose lives have been touched by FTD shared their experiences and perspectives with companies working on potential FTD treatments. The panel included people diagnosed with FTD, current and former care partners, and biological family members of people with FTD. The panelists discussed topics such as their views and perspectives on clinical trials, genetic testing, and barriers getting timely and accurate FTD diagnoses. These discussions will help researchers design clinical trials that are maximally beneficial for people impacted by FTD.

For more information on sharing your experiences with FTD to help improve FTD research, contact AFTD’s Director of Research Engagement, Shana Dodge, at [email protected].
For more information on current FTD research opportunities visit our Studies Seeking Participants page and the FTD Disorders Registry. 

Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Midlothian, Virginia, near Richmond, hosted by AFTD volunteer Carrie Edwards. The event will take place in Community Room of the Midlothian Library (100 Millworks Crossing).

RSVP for this event by emailing [email protected]. You can also download this flyer to learn more.

AFTD recently spoke with Passage Bio Vice President of Clinical Development Juan Chavez, MD, about the company’s work to develop a therapy addressing FTD. Here, Dr. Chavez shares where he finds encouragement about today’s research landscape and how the FTD community can come together to further therapeutic development.

What approach is your company using to treat FTD? 

Passage Bio is a company engaged in developing gene therapies for people affected by neurodegenerative diseases. In FTD, we are specifically interested in correcting deficient levels of the progranulin protein by providing a functioning granulin gene to people who have a GRN variant. We are using an adeno-associated virus (AAV) gene therapy approach to enable people to produce their own progranulin at sufficient levels that will hopefully prevent cell loss.

AFTD Note: Passage Bio’s upliFT-D study is investigating a gene therapy (PBFT02) that may treat individuals with frontotemporal dementia (FTD) who also have a mutation in the progranulin gene (GRN). The company has also announced plans to expand the clinical trial to include patients with a mutation in the C9orf72 gene. To learn more about the upliFT-D study, or other current clinical trials, please visit AFTD’s Study Seeking Participants page.  

What do you think is the most urgent need for persons diagnosed and their families? 

FTD is a disease that doesn’t have an effective treatment available. It’s devastating not only to the persons diagnosed, but also to their care partners and family members. This disease affects fundamental functions that define who we are – our behaviors, ability to communicate effectively, and many other functions as well. In general, there is a great need for treatment that will slow the progression of the disease. Ideally, we can either prevent further deterioration, or if we are lucky, we can halt altogether the process.  

What are the challenges you see and how can we overcome these together?  

I think that general awareness about the disease and availability of accurate information is important so people can be aware of what’s happening and see the possibility of themselves participating in clinical trials. We – the companies – depend on people’s willingness to volunteer for studies. It’s how all of us will make progress in developing treatments.

At Passage Bio, there may be some challenges that are unique to us – each company may have specific challenges depending on what type of treatment is being developed. We have a unique modality to treat FTD, and while we are very excited about our approach because it makes biological sense, we know it’s an approach that requires a lot of expertise.

Bringing together that level of expertise will always be something we need to work on, though I think there is an opportunity there to engage the community – including caregivers, patients, advocacy organizations, researchers, and clinicians – to support what’s required to advance gene therapy treatments like PBFT02. 

What role do you hope you and your colleagues play in empowering the FTD community?  

It’s always important to ensure there is appropriate and timely information for the people affected. FTD and other neurodegenerative diseases progress quickly, so access to accurate information is necessary.

I think any individual, care partner, or family member affected by this disease should have the option to make decisions as to what potential treatments or interventions could be helpful to them, as well as able to meet their needs and lifestyles. There are several companies developing different options to tackle this disease – with greater awareness about these approaches, people will be able to decide what’s best for them

 What is most encouraging about today’s research landscape?  

Therapeutic development is a long journey – collectively, it’s about understanding underlying biology and improving the journey to diagnosis. I’m encouraged by the tremendous progress in what we know about the biology of the disease – this is an essential stepping stone for any organization in thinking about how we can develop treatments for diseases like FTD.

These are very complex diseases from a biological perspective. If we are extremely lucky, we can design one therapy that fixes it completely, but in reality, what’s most likely going to happen is that we are going to have to think about potentially combining different treatments to maximize the benefit we hope to achieve.

There are several companies developing potential treatments by leveraging this biology and using very clever methods – they’re all different methods – to administer treatments. I think that’s a cause for celebration because it increases our chances that we could potentially see a treatment for the disease.

AFTD Note: If you’d like to learn more about ongoing clinical trials, please visit our Studies Seeking Participants page or clinicaltrials.gov for more information. Additionally, to learn how you can participate in advancing research, please visit our Ways to Participate page or the FTD Disorders Registry.  

AFTD Ambassador Spencer Cline wanted to raise FTD awareness and honor the memory of his father. Lawrence Cline was diagnosed with FTD at age 50 and died in 2012, when Spencer was just 13 years old. Because his father’s FTD was caused by a variant in the C9orf72 gene, which causes FTD and ALS and can be passed down to the next generation, Spencer and his siblings have a 50% chance of one day developing symptoms of one or both diseases. 

So, Cline conceived an ambitious, 3,600-plus mile bike ride from west coast of the United States all the way to the east coast. Along the way he would raise money for AFTD’s mission and document his journey on his Instagram page, where he also shared FTD facts to his followers. 

Cline and his future brother-in-law, Paul Petras, began the trek in Oregon on June 16, starting out by dipping their rear tires into the Pacific Ocean. And while Petras had to leave the ride a few weeks before the finish, Cline reached his destination of Sullivan’s Island, outside Charleston, S.C. on Saturday, August 21. This time, he dipped his front tire into the Atlantic Ocean. 

Accidents Happened  

Cline’s ride had its share of challenges. In Idaho, a dog ran in front of his bike, causing him to crash and break his wrist. After surgery and a hiatus of just one week, he continued the journey.  

But on August 12, just 300 miles from Charleston, Cline again crashed, this time in Georgia, after a truck drove too close and pushed him into a ditch. He broke his clavicle and separated his shoulder, effectively ending his ability to ride his bicycle until he heals. Yet throughout the journey, the injuries, and the surgery, Cline continued to post to Instagram, providing descriptions of each day’s progress and facts about FTD. 

The Community Stepped Up 

Although Cline had to step off of his bike for the last stretch of his ride, AFTD’s community rallied around him. On bicycles, stationary bikes, and even scooters, they collectively rode more than 1,000 miles to make up the 300 miles he could not complete. They also shared their pictures on social media, tagging them with #RideForSpencer — effectively expanding Cline’s reach even further.  

Cline biked an amazing 90% of the country’s width, raising awareness and surpassing his fundraising goal of $50,000. “I think my dad would be proud,” he said. “I think he’d be amazed by the support I got throughout the trip and the outpouring of support from the community.” 

An FTD caregiver in the United Kingdom spoke about the disease’s emotional and financial impact in recent interviews with the BBC and Yahoo! Life.

Gareth Heslop, of Sheffield, UK, said that being a care partner for his long-time partner and fiancée, Sarah Frith, has put a “huge strain on the family.” And like so many FTD care partners, he is not emotionally able to take time for himself.

“St. Luke’s Hospice comes around every few weeks and they say, ‘Gareth, you look really tired. We recommend putting Sarah into respite care, just for a week at a time, to help you and the boys,’ but I just can’t do it,” he said.

Frith began exhibiting symptoms in 2019, when she was just 46. “Instead of a toothbrush, she referred to it as a tooth-cleaning thingy,” Heslop said. “We all have days when we say something a bit silly, so I just dismissed it as that.” But as time went on, Heslop kept noticing odd things about her behavior, and in 2020, he started to become worried.

“Her GP … referred her for a memory test,” he said. She passed, but I now know the test isn’t always suitable for people with FTD, as memory loss isn’t always one of the first symptoms.”

Nearly a year later, Heslop sent her doctor a letter detailing his concerns. The doctor referred Frith to a neurologist, who diagnosed her with FTD.

Financial Impact

Since Frith’s diagnosis, Heslop has become the sole income earner; he works full-time and provides care full-time. The Catch-22 is that the additional expense of keeping her at home, which includes adapting the house for her needs, places an additional burden on him to keep his job, even though managing both his personal and professional roles simultaneously has been exhausting.

Unfortunately, most families affected by FTD experience a sharp drop in their earnings after a diagnosis. Indeed, according to a 2017 Neurology study co-written and funded by AFTD found “the overall [annual] household income before diagnosis ranged from $75,000 to $99,000 (USD) but declined after diagnosis to $50,000 to $59,999.”

In addition to the loss of income, families also often must absorb indirect costs. In the United States, such costs can include hospital admissions, office visits, physical therapy, home healthcare, assisted living care, nursing home care, respite care, and time/cost estimates for unpaid care.

Emotional Impact

The Neurology study also examined caregiving’s impact on the health of FTD care partners. It found that “67% of caregivers of patients with FTD reported a notable decline in their health and 53% reported increased personal health care costs.”

Heslop is living proof of these statistics. “My own health is deteriorating too, because I don’t have any space to think about looking after myself,” he said. “I get to the point when it’s been four or five days since I’ve had a bath, and it’s not that I don’t have time to. I just forget to have it.” He also said he has experienced depression. “It’s something I want to talk about and acknowledge, it’s a harsh reality,” he told the BBC.

Unfortunately, the emotional toll also extends to Heslop and Frith’s two children, Lewis and Euan. “It’s hard enough losing a parent when you’re young, but with dementia it’s basically like a long goodbye – you’re grieving before they’re actually gone,” Heslop said. (This phenomenon, which is called “anticipatory grief,” is a hallmark of the FTD journey. AFTD’s Walking with Grief publication explains this and other elements of grief in FTD.)

Heslop intends for Frith to stay in their home for as long as possible. But he is also realistic about the possibility of her needing to move into a facility. “The decision will be made slightly easier knowing I’m making it not just for Sarah, but also for the kids,” he said. “Obviously Sarah’s needs are paramount, but I have to think about them too.”

One might wonder why Heslop took the time to be interviewed. “I’m hoping by sharing our story people may know not to dismiss behavioural changes in loved ones even if they’re younger,” he says. “I’d also like people to know there is support out there. When Sarah was diagnosed, I did hours of research, so we were prepared as possible for the future, but I’ve spoken to a lot of people who feel abandoned.”

FTD is a complex disease with emotional and practical challenges that can be as isolating as they are overwhelming. Finding a support group can provide you with a safe space to share your thoughts with others who understand and trade resources for the journey ahead. AFTD’s HelpLine can support you and answer any questions you have about FTD; contact the HelpLine at 1-866-507-7222 or [email protected].